Looking back I have had RLS for many years but never a real problem .3months ago I had surgery and since then it has become unbearable .I’m in early stages of trying rinipirole so worried about that .looking forward to reading posts for support
Thanks in advance
Welcome.It's quite possible that you are experiencing withdrawal from heavy painkillers after your operation.
It's worth trying the Ropinerol to see if it relieves the fidgets.
A warning ,though, if the Rop works but after a while- hopefully many years from now,. It ceases to be effective and the rls is spreading ( augmentation) on no account raise the dose, no matter what any doctor tells you.
Please come back to us, and let us know how that goes.
There are other strategies that can be tried.
I had a similar experience as you have, and am now on opioids with good results. I'm 74.😎
Thanks for your reply. Much appreciated. I have had knee replacement and have taken cocodamol and naproxen for a few years. Just spoken to doctor as Rop has worked few days then I’ve had to increase. He’s prescribed 1mg at night as .5 stopped working after 5 nights. Reading about Rop on here has got me a bit concerned but during night willing to try anything. 😥
Ok-- but please don't go any further with Rop or any other Dopamine Agonist.My next step would be to plead increasing pain and look for an opioid, ideally Buprenorphin, Temgesic.
It is a bit of a sledgehammer ,but at our age, I would be more concerned about quality of life, than medical niceties.
There is a thread here started by Shumbah on the whole Buprenorphin debate.
You can probably find it using the search icon at top of page - magnifying glass.
Good luck.
Thanks. That’s helpful. Telephone appointments with new doctors difficult. But you’re right about quality of life. Not good on internet but will look for thread you have suggested. Appreciate kind words
I hope your GP warned you in detail about Impulse Control Disorders and Augmentation before prescribing the Ropinirole? He or she has to warn you. As Madlegs advises, don't increase the dose! If 1mg doesn't help, reduce by 0.25mg every 2 weeks and ask for pregabalin instead. It's first line treatment now amongst top experts because of the very high risk of Augmentation on Ropinirole, Pramipexole and Rotigitone.Did your GP order blood tests first? That's essential because the majority of RLS can be resolved by raising serum ferritin above 100, preferably 250 without the need for medication.
Ask for bloods now and get the actual numbers of the full iron panel.
Did the GP check whether you're on meds that trigger RLS like antidepressants, antihistamines, statins, beta blockers. PPI, cough and cold meds?
Sadly, RLS isn't taught at medical school or during GP/ neurological training in the UK so the best research and experts are in the US.
Here's the latest treatment algorithm from the Mayo Clinic in the USA.
mayoclinicproceedings.org/a...
Thanks Joolsg, he did mention these on first consultation. I am not well versed in both the syndrome or medication and like a lot of elderly people just look to doctors for answers. Blood works are fine though need vitamin D supplements Apart from arthritis I have always considered myself quite healthy ( although always had a weight problem).
I do take low dose of fluoxetine which I have done for quite a few years.
I have learnt so much in the one day I’ve been on this forum and realise some suffer so much more. Just find it hard dealing with sleepless, uncomfortable nights.
I thought sleeping meds would help but he wouldn’t prescribe them for me hence the trial of Ropinirole.
Going on your advice if the 1mg doesn’t help won’t be increasing.
Are you from USA..?
Will look at your link.
Thank you so much
No I'm in the UK as are most members on this forum but the best doctors are in the US so we follow them.Fluoxetine will trigger/worsen RLS but you need to balance the need to take anti depressants with the severity of the RLS. There are a few 'safe' anti depressants like trazodone, depakote, lamotrigine and carbamazepine. If you are taking the fluoxetine for anxiety, then the alternative meds for RLS like pregabalin and gabapentin are also used as anti anxiety meds.
Ask for the actual numbers for your serum ferritin and serum iron. Your GP will tell you your bloods are fine but serum ferritin needs to be above 100, preferably 250 for people with RLS.
Some people develop RLS when they start taking anti depressants because ADs increase serotonin which decreases dopamine and we need dopamine in our brains to reduce the RLS.
The more you learn about RLS, the better the treatment you'll receive as you can show the latest research and treatments to your GP. As they've never been taught anything about RLS, it's hard for them to do their research and treat you within the allotted 10 minute appointment.
Never had the courage to question GPs 🥺but could start. I have low mood since loosing my son 22 years ago. Came off a couple of times but mood dropped so have just taken them regularly since.
Looking back over years think I’ve had a problem with restless legs ie travelling on plane could never settle and always fidgety when first going to bed. Nothing as severe as the last few months.
May I ask how long you have suffered and what has worked for you. ?
Have seen these vibration machines on line ???
Does it ever disappear.?
Sorry to be so dumb
I've had very severe nightly RLS since I was 37. I'm now 61. I was on ropinirole for over 10 years and at first it was miraculous, then after 5 or 6 years it stopped working, the GP increased the dose and it just became more and more severe until my whole body was twitching 24/7 and I couldn't bear it. My GP knew zero so I joined this site 6 years ago, learned I was suffering augmentation and that the only solution was to reduce the Ropinirole. The withdrawal nearly killed me. That's why we are all so wary of elderly people being prescribed these medications. Getting off them is hellish - worse than getting off heroin or crack cocaine according to experts. You go days without sleep and extremely intense RLS, body jerking very 10 seconds. falls are frequent as the only relief is walking but you're so exhausted you fall a lot. Imagine getting off these drugs in your 80s?After 5 years on oxycontin and pregabalin which didn't really help - I still had severe 36/40 RLS, I asked for buprenorphine.
I am now taking 0.4mg of buprenorphine at night and it has been miraculous.
However, most GPs will not prescribe buprenorphine unless and until you have tried pregabalin.
I'm so sorry to hear about your loss. I understand why you would need help. The anti depressant will worsen RLS but hopefully you can reduce the symptoms by raising your serum ferritin and asking for pregabalin. The average dose is 150mg and is taken only at night because it causes drowsiness. It takes 3-4 weeks to become fully effective and you should avoid magnesium 2 hours either side of the pregabalin dose because magnesium reduces effectiveness.
OMG I feel such a fraud after hearing your story. Suffering for years like that. Taking on board all information and will be considering everything. Thanks so much.
Dread from 8pm onwards and going to bed. Where bed used to be my comfort now my nightmare.
You're absolutely not a fraud. The fact you now dread going to bed says it all. You are clearly suffering and do need treatment. But Ropinirole should no longer be first line treatment, especially for anyone over 50 as the augmentation and withdrawal would be too hellish. Pregabalin is just as effective for the majority and that's why it's the preferred treatment.But you may find your RLS disappears if you can raise your serum ferritin above 100. As the GP said your bloods are fine, you can buy ferrous bisglycinate ( gentle iron) and take every other night on an empty stomach. That may well start to improve your symptoms.
Let us know what you decide to do.
I seem to have been blocked but don’t know why
As in you were WorriedS and now can't log in? You can simply post that you were WorriedS and are now SheilaW. Or you can send a message to Kaarina, the administrator of the site & she can guide you.
I suggest you contact HU with your query about your usernames, SheilaW and WorriedS and I am sure they will be able to help you. support.healthunlocked.com/...
Joolsg is so right. I've recently come off DAs and started on gabapentin. I thought it wasn't going to work but after all the help and support from the marvellous people on this site I have stuck to it. I changed to pregabalin as I seemed to be just taking pills and it is finally working. Tonight I came to bed and actually watched a TV programme without my leg going crazy. I feel so grateful. I hope it lasts. Good luck with your treatment. You will get through it
I would agree with Madlegs, I have had RLS since childhood, I'm now 72. It's only in recent years that I have even had a diagnosis. I was prescribed Ropinerol and then pramipexole. Gradually it was increased to the maximum dosage which lead to augmentation. I am now on 0.088 mg at night and a bupenorphine patch which works well for me. I would say, it is important not to increase the dosage of ropinerol, even though it may be tempting at the time.
One other thought to connect your knee op. Others have mentioned iron and though the drs may be satisfied with your Hb/ferritin ( was this checked as well ) as regards what could expect after such an op, it can still be on the low side & ‘they’ expect it to gradually return to your usual levels, but it could be low enough post op to trigger RLS if you’re susceptible.I would ask for the figures.
A lot of folk need extra iron after a big op.
And keep ropinorole to the absolute minimum.
If it relates to post op blood loss you may not need any treatment long term & you don’t want to get into the viscious circle of side effects, withdrawal etc.
Thanks for all lovely supportive comments. I took 1mg Ropinirole last night. Although not as bad still not a goodnight. Don’t know if it’s just my imagination but feel as though pain in my operated leg worse. I just hate the thought of ringing doctor AGAIN ..one good thing didn’t have to get up 3am for a bath 😘
I have telephone consultation next Monday with Doctor. Think I’ll take the 1mg ripinirole until then and see how things are. At least I’ll be able to discuss outcome and all I have learned so far on this site. Need to be a little bit more aware of RLS so I sound a little confident. Thanks again everyone
I would start with 300 mg of gabapentin rather than pregabalin as it can be increased in smaller doses. Once you find the correct dose you can switch to pregabalin if you like or stay on gabapentin. They are basically the same. They take a few weeks to work so start them before you come off the ropinirole, although they won't work until you are off ropinirole for several weeks so don't bother increasing the dose before then. Take it 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. As for the gentle iron, take it with a 250 mg tablet of Vitamin C or with orange juice.
Thanks Sue. Just wondering how doctor will react to me requesting it .. had to fight to get Ropinirole (though I had wanted sleeping tablets as I thought that was the problem) so much advice I’m grateful for
WorriedS, so sorry to hear what you are going through, but it is great you have found this site so early (before an addiction to DAs) and if you are able to take the advice of these kind, knowledgeable, helpful people, you will be better off in the long run. Several times you have expressed your concern about challenging your doctor or making your own suggestions or requests. I used to feel the same way. Especially with the neurologist, who I hoped knew more than the people on this site (as it turns out, he may not). I have 2 different doctors helping me, a GP who specializes in osteopathy and a neurologist. The best way to introduce ideas or requests without sounding like a jerk, for me, was to explain I found an online support group for people with RLS and have learned that many medical professionals don’t have proper training in RLS (they will know this to be true, even if they don’t agree with you out loud). Then just explain that from what you have learned, it is important for you to find out your serum ferritin level and that even if it looks “normal,” as a sufferer of RLS, your levels may still need to be raised (my GP raised her eyebrows, but agreed to the test and is now helping me raise my ferritin level, which was 37-big help!!). Also, explain that DAs are no longer considered the first line of defense to treat RLS and request whichever medication you would like to try first (based on your own research, if you have time, or what is being recommended in this group). The other thing they won’t know is if medications they have prescribed for other things are aggravating your RLS. If you are taking anything-prescribed, or even vitamins-you may have to research the interactions yourself. It seems crazy, but with RLS (and maybe all serious health problems) you have to try to be your own best advocate. I hope you can begin to feel better soon. Many of us know how you feel about dreading trying to go to bed and how awful that is since it used to be a happy place. But hopefully bed/sleep will soon be a comfort again. Thinking of you and wishing you luck.
Thanks for great advice. Will be speaking to doctor with a little more confidence on Monday. I’m torn between needing something to help and fear of these side effects. Will be so careful though and know now what to look for. Such brilliant help already from you wonderful people thanks
Ropinirole is one nasty drug - if the augmentation doesn't get you the impulse control disorder might! Compulsive gambling has been reported in users that never gambled before! Ahh Dopamine.
From Wikipedia...
"In November 2012, GlaxoSmithKline was ordered by a Rennes appeals court to pay Frenchman Didier Jambart 197,000 euros ($255,824); Jambart had taken ropinirole from 2003 to 2010 and exhibited risky hypersexual behavior and gambled excessively until stopping the medication."
Frightening reports. 😱 doctor did mention this problem. When desperate for sleep at 4/5 in morning I’m willing to try anything. Then you hear stories like this and don’t know what to do. Thanks for sharing though.
Doc wagged Ropinirole at me - "It's the only thing you can do" and I was surely tempted. I discovered this site and all the warnings about Rop. I was fortunate that iron supplement therapy helped me dramatically.
That will be my first ask of him. He did say low iron was a cause but said my results were fine. Took his word but may have to challenge him 😱Thank you
My RLS was Severe - Ferritin level was 49, % Sat was low 20s. I read this from Johns Hopkins - game changer for me....
hopkinsmedicine.org/neurolo...
Video (Dr. Earley from Johns Hopkins Neurology)...
youtube.com/watch?v=2stIoo8...
Thank you so much. Another interesting point for my doctor on Monday 👍🏻
On one post Joolsg mentioned codeine better than co-codamol. I’ve taken cocodamol for quite a few years for my arthritis thinking better than straight codeine. Is it ok to stop them and just take codeine( I have them from when I was discharged after knee replacement
I can definitely, unfortunately, emphasize with youI About the time I was diagnosed with MS I “think” is when I started noticing RLS. But, since I was still able to exercise it was controllable with “Hyland’s (This is the brand name.) Restful Legs”. If you live in the US try them! Anyhoo, I have been on Ropinirole for several years; had been warned about “augmentation” (Which, by the way, my Neurologist had never heard of!) on here, and, you know what? This medication was/prescribed by both my PC and Neurologist & research of my own. (AlWAYS do this for any medication,; on anything you don’t understand.) Ropinirole works for me me about 80% of the time and with the use of the “Restful Legs” inbeteen about 90% of the time.), I’m good with that! My worse times are at night. (And, here I thought I left my “all-nighters behind in college! [I’m 70 yrs young.]Keep in mind, members on here can only tell you our experiences; we’re not physicians. Talk with your PC and voice any concerns you have.(Make a list before going so you won’t forget anything.) Good luck
Thanks for your story Midnight -Blue So much info to try to absorb. Need a couple of hours with my GP but 10 minutes on phone will have to do. List of questions getting longer each day thank you
New guy with old RLS
New Member, old RLS
Depressed and desperate
Worried and desperate
Desperate for some relief 
